1.25.2010

First I just have to say, I jumped on the chance to *meet* more of the people that read this blog because I'm always amazed how sweet, understanding, and compassionate you all are. At first this blog was created as a journal for sweet little Lillian to see the progression from growing in her mommy's belly, to making her first appearance, rolling over, crawling, walking, etc. Then, when we were given Lillian's diagnosis this blog became my only outlet. The only place I felt comfortable talking about my feelings of doubt, sadness, loss, and desperation for feeling "normal" again. I never imagined the words of strangers could be so uplifting and encouraging. I never even thought for a second that people would be interested in our life story. So THANK YOU for taking the time to say hello, post a comment, and for encouraging me to stay strong and be a good mommy for Lillian.

Question #1 from Heather - "How did you find out you were pregnant with DD and what was your reaction?"

I found out I was pregnant with Lillian on New Years Eve 12-31-08. It was our fourth cycle trying to conceive. We were having people over that evening for a little New Years party and I wanted to make sure it was ok to have some champagne with everyone, so I tested... at WORK! lol. Probably not the smartest on my part, because when the test said "pregnant" I about fell over and passed out in shock. The rest of the afternoon I was worthless at work and had the hardest time concentrating. I walked around with a rediculous smile on my face all day, and convinced Phil to come to my work for lunch. I told him about it and he was shocked and happy. My best friend was in town that day and I told her and her husband (she was about 5 months pregnant) and I called my other close friend and told her too. We didn't tell any other friends or family until I was between 8-12 weeks pregnant, and luckily my friends know how to keep a secret. :)

Question #2 from Olivia - "What are your favorite blogs to read?"

My favorite blogs to read are...

The Thomas Chronicles - Mrs.Bro is hilarious, sweet, and has a handsome little baby named Thomas. She's absolutely fabulous and a smokin hot librarian ;)

Shenkinators - Ali is such a great mommy to her two little boys Cole and Dean. Dean is another baby that has PWS (like Lillian). Ali has been such a blessing to me, Phil and Lillian. When things looked dark and scary, she shined a light on us with all the best information and contacts to help us on our journey.

Completely Eclipsed - Melissa has the ability to tell it like it is when it comes to being a mother. Every time I read her blog I find myself nodding my head in agreement and laughing. Plus, Isabella is just too cute. If you want to know the truth about mommyhood, read her blog!

Question #3 from Kristin - "I was wondering if yall were planning on having any more babies in the future."

We're still waiting on the results from a genetics test to see if Lillian's PWS was a random one time thing (meaning there's less than 1% chance it'll happen again), or if it was caused by some kind of funky gene imprinting "thing" (meaning there's a 50% chance it could happen again). If the test results come back next month saying it was random and it's not likely to happen again, we'll probably start trying for another baby very soon :). We want Lillian to have a sibling close in age, someone to challenge her, play with her, and love her. If it's the funky imprinting gene... well, we'll probably look into IVF and it'll be a while before we get into that because of the stress involved.

Question #4 from Megan - "I'm curious to know what you did or did not like about your pregnancy?"

I liked feeling Lillian's kicks and squirms. I liked my body. I liked that my cravings were healthy (most of the time) and I actually ate healthier when I was pregnant then before I got pregnant. I didn't like being so limited in activities (tennis, running, boating, scuba diving, etc), especially being pregnant in the summer. I didn't like the awful sinus infection I got for the majority of 1st tri, the flu that followed it, and the headaches from functioning on no caffeine. (All unmedicated) I really didn't like cancelling our cruise :(.

Question #5 from Laura - "How did you meet your husband?"

Phil and I met at our church. There are 3,000 members, so it's pretty awesome we even crossed paths! We met in a college bible study group and my ex-boyfriend introduced us! We started dating about 6 months later.

My greatest wish for Lillian's future and our family is for a cure to end the hunger that people with PWS deal with every single day. If we could end their hunger, they could live independently and ultimately increase their over all happiness. All I want is for her to be happy.

Absolutely. We realize we have to work harder on our relationship every.single.day. The divorce rate for couples that have special needs children is 80% and we are very aware of the higher level of stress that we're both dealing with. We've always been involved in a small group from our church of other younger married couples, and we're also involved in another group through our church that is meant to help build marriages. When one of us is upset about the future with Lillian, the other one usually stands strong and goes the extra step to make sure they can catch a break. We make sure to tell each other how we're feeling and compliment each other. I wish we had more date nights, but since Lillian needs to eat through a g-tube, we don't have anyone we can leave her with right now. When we are both feeling down at the same time, we see a counselor separately. I never imagined this as our future, but it's working and we're developing a stronger bond by just making it through the day.

Question #8 from Sarah - "What are your greatest joys and some of your greatest challenges of being a new mom?"

The greatest joy is seeing her develop. She has so much stacked against her but she takes every day like a champ. She pushes through therapy, sleep studies, bronchoscopies, blood draws, and everything else we challenge her with ALL the time. She's been through more in her short life than I have in my 26 years. I'm in awe of her strength and cheerfulness. I love to watch her soak in the world around her and try new things. The greatest challenge of being a new mom is putting aside my expectations. I never expected to have a child with a genetic syndrome. I never expected to fear for her future. I never expected my daughter to need so much help just lifting her arm or holding her head up. I never expected to feed her through a tube in her nose or a hole in her stomach. It's a challenge to not compare her to other babies her age. There are so many challenges to being a mom, and being Lillian's mom is a very rewarding challenge.

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About Me

Hi! This place is where I write down random thoughts and keep track of life's moments.
I try to be an open book and will answer any questions you may have about Prader-Willi Syndrome or being a parent to a child with special needs. I will be the first to tell you to enjoy your life, regardless of the cards you've been dealt!